Gingergrrl
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I now got tested for the autoantibodies at celltrend and I also took part in a clinical trial for POTS autoantibodies.
Hi Malea, I don't think I've talked to you before and welcome to the board. I was curious if you could say more about the clinical trial that you participated in for POTS?
I will try to test the considering autoantibodies for that, but I was told that 50% of the people with AGG are seronegative. So, a negative result would not mean much.
I have a friend who tested positive for AAG autoantibodies which got her approved for IVIG (so it might be worth testing if you have the opportunity). I am negative for that autoantibody. (I have not re-read this thread in case I already mentioned that above)!
Back to the POTS-autoantibodies, I have a doctor who would be willing to try medication for the autoantibodies which unfortunately doesn‘t include IVIG. Right now standing more than 10-20 seconds is nearly impossible for me and I additionally wonder if the autoantibodies-thing is triggering my severe MCAS.
What happens when you try to stand for more than 10-20 seconds? I am curious how similar you are to where I was pre-treatment. I could only stand for about 30 seconds max and this week is the first time since Oct 2014 that I left my home without a wheelchair.
Do you get shortness of breath, tachycardia, chest pain, etc, with standing/walking or other symptoms? I also had extremely severe MCAS with anaphylaxis (pre-treatment) and I know there is a proven connection between POTS and MCAS even though I cannot explain what it is.
I first thought of an agonist for the alpha1-blocker oder an antagonist for the beta2. Like Midodrine or Proponalol. (Which have reasons against them... like my cyanotic fingers which could be a problem with Midodrine. Or the Mcas, for which my diagnosing doctor once told me that betablockers are a bad idea because of triggering anaphylaxis). I even thought about trying Mestinon.
We are all different so take this with a grain of salt but Midodrine and Atenolol are both extremely helpful for me. My MCAS specialist has no concerns about my low dose of Atenolol triggering a reaction and it never has. On the other hand, I did not tolerate Mestinon at even 1/8th of a pill (when in theory it should have been a good med for me).
My doctor prefers to try Florinef. I was thinking that something that would work against the blocking/activation process of the autoantibodies would help me more. Which, in my understanding, Florinef primarily wouldn’t do.
I also did not tolerate Florinef but attempted it for several months in 2014. It gave me severe headaches and did not help my symptoms whatsoever.
But now I‘ve read that Florinef also has little glucocorticoid effects. Could that be indirectly helpful with the autoantibodies?
I have no idea and am not sure of any connection between Florinef and autoantibodies? (That doesn't mean that there isn't one, I just hadn't heard of it).